Monday, August 17, 2020


Welcome Daisy

Lettie; origin French for Leticia meaning one who brings joy. Rome; double entendre I would like to be roaming anywhere but the internet...I did however not expect the world would be in my same predicament. Rome; strength and power. The combination came to me one night and I thought wouldn't that be bliss to be living all three? I thought if I couldn't physically live it; I could I share how I have tried to within the confines of this vessel moored. So a journey began and a friend came up with a perfect logo for a new blog, to re invent myself and leave chronic fatigue chronic hope behind. Lots of ideas and plans and then it sat and sat and sat stale as old bread and beginning to show signs of mold. There was no joy, no roaming, instead a paralyzing inability to begin again. So this inspiring idea had become a blinking billboard sign of my failure. A name in name only, what is in a name in this case the name which began with such excitement is just another thing lost. Lettierome gave me no joy and instead brought me a lot of self loathing. It became this albatross around my ankles as heavy as gravity often felt with this illness. I became suffocated with my inability to move forward, overwhelmed by my lack of technological merits and felt like a failure.

So last night, as I reflect this morning what changed was a confluence of events some conscious others not and the ability to let go of lettierome. Not the meaning, but starting from scratch. Rather, I decided to take the road already traveled and begin again here.

It has been a brutal summer and last night that famous light switch was taken off of dimmer and I finally  have a bit of clarity in my brain. I did not struggle nearly most moments of yesterday to just feel alive. Something finally gave and per usual I have no idea how long it will last so instead of trying to figure out a new starting place I came back to my original home and I changed the name; to my own name and will begin again. Myalgic Encephalomyelitis aka Chronic Fatigue Syndrome is not magically going away; but I am still here. And there have been more times than not recently I was not sure that would be the case. 

August 16, 2020

Also the signs. Subconsciously this morning that I did not remember until I tried to airdrop a photo for this post. I had an entire rant about the poison "Apple"and my tech challenges. I don't have my photos on this computer, I am only using this computer because my beloved laptop where the keys clicked perfectly became obsolete...something I felt we had in common.  I left Facebook for IG a few months ago and saw this post by Cheryl Strayed, the author of Wild yesterday morning. The post below ( I did do due diligence and message hoping okay to share) was about writing which was not unique, what was however the photo she chose to accompany it and the message she shared.


Somewhere in the crevasse of my brain that stuck; Daisies, writing, endure. I have listened and observed the reckoning COVID-19 has taken over my circle of friends and the world. I thought to myself many times as people talk about the harms of isolation; I finally did what is incredibly difficult for me to do I realized I have endured and endured mainly alone. There is this reckoning of the damages of isolation, fear of the unknown and everyone is banding together to help everyone get through this gut wrenching time in our history. I realized I have a unique perspective that its time I start sharing as a badge of honor rather than a cloak of shame. If nothing else I have endured over a decade of a parallel experience and maybe it's time I take some of that knowledge and begin to share or at least grab the computer I curse and get something out just for today. So thank you Cheryl, times two, because the night of August 14th as my body and been in pain for over 72 hours as I stared in the mirror I looked to the left and saw my badge of honor Cheryl Juech had made for me "You are very brave." I willed myself to let those words wash over me and into me; if she believes it I will too.

I am writing this hoping as you read you will remember that this time will pass. It is not easy and everyone individually has unique challenges that we can only listen to and try to understand. I am also writing from a point of acceptance, This is ME. I live with a chronic misunderstood under funded illness that I will never stop searching however I will stop trying to separate myself from it; I have lived in the past hoping fo a different future. I can not do that any longer. With COVID-19 has come a new group of "COVID long haulers" aka they have joined our club they just may not want to admit it yet. But all this is for another day.

Today, is for a little joy, and that is our new family member Daisy Mae. You can follower us on Instagram at DaisyMae.33. I wanted to change her name to Lettie because she is the personification of one who brings joy. And like the blog realized there is only so much in a name, she doesn't need it she is it. I hope this new phase of my blog will encourage you to ask questions, especially trying to deal with a confined life. I will try to begin being more social media savvy to add some joy and do all in my power to spread that if we want joy back we need Joe back. Politics is in my blood and my heart, I can not leave it to the side. So I understand if for some this is not their thing, don't worry it won't be everything. 

I mused about funerals a lot lately, thinking of all those that are dealing with unprecedented grief. COVID is heart wrenchingly cruel robbing those the last precious moments to hold someone the most powerful transfer of love if you have had the fortitude to endure that act. Holding someone you love telling them it will be okay. The power of touch. And then those that lost someone from a different illness and are forced to choose between the safety of others and a celebration of their loved ones lives. This lead me to two of our greatest Americans. John McCain and John Lewis. The two could not have come from more different backgrounds, different political parties yet their lives interwoven in duty to America. Take a moment to reflect on these two great men pillars of what we can all strive to be flawed and human and decent and unstoppable had one final moment in common; every living President attended their funeral ( accept Jimmy Carter who was there with a delivered message) yet the sitting President was not welcome at either. Please think about the history of that, and ask yourself what else do you need to know.

If you got to the end of this blog, like the Monster at the End of the book haha amen hallelujah you endured my muddled steps back. Thank you. Sincerely thank you. I hope you can find a little joy today, and if not if your legs will take you my goodness please roam! 

My heart was a little scared of this one; grief is a funny trickster as I've said.
I've missed Sophie often more since Daisy arrived, I guess that's what happens when you are reminded of Love 

Friday, March 15, 2019

Borrow my Belief

Goodbye for Now

I seem to have lost my words. This photo I took last year on Sophie's birthday. March 28, 2018. She was 15. It was as I may have said or not before a comedy of errors with a tri-pod and and a cactus mishap but I was determined. Deep down I knew it would be her last birthday. I have a lot to say, but I just cant' seem to find my words. Although it is a bit easier since I dusted off my old computer. However, since Sophie's passing I felt like a bit more of my identity has been whittled away. I was the girl with the cute little white dog walking through the airport. Now I am alone walking through the airport. That coupled with a combination of medical or age related issues I have gained nearly 20 lbs in the last 5 months while eating less and moving more. This has messed with my head, messed with my jeans - well my entire wardrobe. But more importantly as I cried last night realized it wasn't so much that I was angry. I am scared. This is one more thing that my body seems to have taken. How much more can I lose? I have always been thin, and never once took that for granted. Now, without warning one more thing it feels like this illness has stolen from me. This illness I often feel like there is a sculptor chipping away at me bit by bit as I try and hold onto my sense of self and just when I think I've got it they come back to etch a bit more from me, in this case the artist decided to throw on some more clay.

Getting ready has also been my main coping mechanism fake it til you make it. I never don't get dressed and now nothing fits me and what does I don't feel good in. So between losing Sophie and now losing the size I have been for nearly 8 years has all been a bit too much. I looked back at photos since I began this blog and so much has changed and a lot has stayed the same. The most amazing thing that has changed is I am not alone. I no longer need to define or explain this illness there are mountains of resources and movies and research going on. Not enough. But enough where I can switch from hope to faith.

So with that faith, I am ending this chapter or phase of this blog and going to take some time and re invent myself in some shape or form. I need to find a new way.  I also no longer want to use the name - Chronic Fatigue, it is demoralizing and I no longer accept it. I am working with a counselor who bless her heart said you don't need counseling - you need use your gift and your knowledge that this illness has handed you. A few years ago I would not have been able to hear that nor believe it. ButI am getting there. She said you have everything but the faith in yourself and that is just doubt. She said until you get there, "borrow my belief" and I took those words to heart. What a beautiful gift.

So this is my soft opening so to speak, I am going to begin a consulting business for those navigating a new illness. I would especially like to focus on children or teens with ME since if treated quickly they are the most likely to be able to recover. I'm not exactly sure how it's going to look and I'm learning to be okay with that. I just know that I have spent many hours on the phone or texting with people helping them either understand what has been prescribed or be a sounding board or helped find resources to find a better suited doctor. Most importantly I know I can not only listen, but hear and help try and put some pieces together to lessen the pain and be an advocate for their healing. So message me, it's me and a phone - that combination has always been a winner... as my dad said my first year at Boulder, hey Heather AT&T sent us flowers this week to thank you for your usage!

Finally, I just can't continue this blog without Sophie sitting next to me. She is on my opening photo she is everywhere in this blog. I have said goodbye to her and it feels right to let this chapter end with her also. She was my side kick and my unconditional support. When I got back to Phoenix after her passing I was shocked to look out my balcony and I snapped a photo the Torry Pines that merged together the one on the right looked dead. By that evening as the sun set where those two trees once overlapped there was only one. The one remaining still leaning to the right, but now alone. I stared at that empty space for a long time, and still do and shake my head of the timing of it all. I realized they are in the background of the photo above.

In my gut and heart of hearts I felt when she left I would be well. And while my new treatment has gotten me much better daily energy it is not close to my old self or old life, but there is a stability and a change. Neither of which I have experienced in years. When I started this blog I was explaining symptoms to friends and family on why I kept canceling plans. I was exposed to the core trying to figure out what was happening to me. And now, well now, there is a network of more than A Million Missing. There are documentaries, facebook groups, writers and bloggers, advocates and a tidal wave of change that at times seems monstrous and other times feels like a drop in the ocean. And it is with that change that I need to push myself to somewhere that scares me, to define a life with this illness. As I battle that fine line everyone does between acceptance and cure. There is room for both, I've decided or perhaps Sophie decided for me it is time to reclaim a little that was chipped away. And that is creating a unique career for myself. I'm putting my foot into that metaphorical ocean until I am at the beach.
So I leave you with this exciting news...I had a blueberry my first without a reaction in 6 years! I was explaining to my doctor how this weight gain I felt like the girl from Willy Wonka (a movie I despise) that blows up like a blueberry...and then I laughed and said oh by the way I actually ate a blueberry pancake this week with only a slight reaction; oh the irony. That side bar had us both laughing at the absurdity of it all. You have to laugh, even thou when I got in the car I sobbed to my mom that I had gained more weight. That's what you do with anything in life, I am not alone you laugh until you cry and you do it all over again. And then somewhere and somehow no matter what you find a way to choose joy even if it is a moment. Moments are really everything.

So to each and every one of you that have supported me in this journey thank you. Thank you doesn't cover the love and understanding this platform gave me. There will be a new blog with a new name and some tweaks or divergence from this illness. I will get over the 20lbs one way or another - I will find the grace and the gratefulness that I can afford new clothes. I will remember that this illness started with me rapidly losing 30lbs and diagnosed with medical anorexia and I will find a way to re frame this narrative and have a little faith these pounds are temporary and perhaps allowing me a little something to hold on to as I have been able to sustain more activity. And if that fails I will need bigger jewelry!

This is post 300. It seemed a fitting way to end. When I find my new way I will post it here and I hope everyone comes with me. I could keep typing away because I'm a bit scared to say goodbye.  Then out of nowhere, the words of Mr. Rogers sneak into my head, it's just "goodbye for now." 

Add caption

Thursday, December 6, 2018

Back to the floor...that I love...Sophie Chronicles Part 2

The first time I returned to Phoenix on November 11th, Christine, my long term helper had spruced up my condo.  Nothing dramatic just a little six year face lift.  Most were little surprises except the two new chandeliers.  One for my dining room and one for my closet.  It was such a treat to return to these fresh updates.  She had purchased new rugs for my bedroom, and I actually had matching pillowcases for my duvet; "matching" really isn't normally my thing.  She got new bath mats and some new towels.  The chaise on the back porch that was past its prime was gone with a fresh replacement.  However, the most exciting thing she did was fancy up my closet.  I love my closet in Phoenix; even though it wasn't anything besides a basic walk in closet with a mini refrigerator and an ugly light fixture.  Christine's husband had put together (the a bit over the top for the space chandelier) so that wasn't a surprise except perhaps the scale of it...but what was a surprise were the lucite tables one that held the printer the other a mirrored jewelry box.  A mirror now hung above that table.  But the icing on the cake was the blue velvet tufted stool.  I was in love.  Much deeper in love than before.  I had an odd serenity in this closet and not often but every now and then when I was here alone and not doing well I would sit on the floor.  I just found it very comforting - quiet and Phoenix is so bright it was nice to be in a room without windows it felt safe.

The first week after Sophie passed I got into a routine to clean out one drawer or cabinet.  A really difficult aspect of this illness is the inability to be in motion; when all you want to be is moving.  So this was a fulfilling compromise that kept my mind and body moving without much effort.  So in the evenings when it was quiet I would find a cabinet, sit on the floor and sift through items. 

One afternoon Heather who helps me in WI was over and I felt good enough to do something but not good enough to get in the car and go somewhere and I said well we could do a few drawers.  The two of us sat on my living room floor and began going through a drawer in the cabinet under the tv.  A few minutes into random cords and tv manuals Heather looked at me and said, "I don't think I've sat on the floor since a child - this is oddly calming."  I smiled and said it is isn't it.  I started to talk/sing "back to the floor, that I the gypsy that I was.."

I tried not to cry, as I told her that was the song that I had playing when Sophie passed.  Most of the day was silent or I had Betty Who's I Love You Always Forever on repeat for awhile.  Then I switched to Gypsy.  Then I had turned everything off but put a Fleetwood Mac concert on the tv in the background often on mute.  When Dr. Yehle arrived it had been quiet and I panicked a bit realizing I wanted to hear Gypsy.  Sophie was nestled on my lap and I was trying to get it on my phone, but as luck would have it Amazon music doesn't have Gypsy unless you have the upgrade...if you were wondering.  And I was concerned that if it was on Youtube on my phone what song would come next.  If you are also wondering, no my phone doesn't have my music because my computer and phone won't "talk to each other", thanks Apple.  So this technology frustration was amping up my anxiety.  These are the things I focused on when I didn't want to focus on what was right in front of me; or perhaps the exact opposite I wanted all of my attention on what was happening but I wanted it a certain way.  So I asked my mom to come back into my room and grab my computer where my sweaty fingers wouldn't move the mouse very well.  At one point I looked at Dr. Yehle and said oh you are waiting for me and he softly said, "there is no hurry" in that calm tender voice when you feel so cared for that it breaks your heart.

I finally found it, "who faces freedom with a little bit of fear.  I have no fear I have only love." There were never truer words... I had only love.  I was trying to be back to my own "velvet underground, to a room with some lace and paper flowers..." I was transported back to my corner apartment with the slanted floor, the walk in closet in the living room, the two doors to enter and the lamp covered with a scarf.   The last place I had lived in Milwaukee prior to moving to Phoenix - when the entire world felt like it was wide open to this odd little Gypsy.  But right now "it all came down to you." And much of the last twenty years passed in front of me before I ever met this sweet little soul to this moment when I couldn't imagine my life without her.  How was I to know  the storm that was brewing in front of me fifteen years ago and that she would be my north?  "She is dancing away from me now.  She was a wish. She was just a wish."  She was my wish I never knew I had made.

My Wish Granted

Sunday evening, November 18th,  the night before we left back from Phoenix to Milwaukee I had had my first drink in a really really long time.  I had one tablespoon of gin with tonic.  I felt really blessed I didn't have any negative reaction to the drink that was a tonic for my frayed nerves.  So that night I fell asleep pretty hard to wake up sometime around three in the morning and I could feel Sophie wasn't in the bed.  I groggily got up and quietly called her name. I turned to look in the bathroom and then turned the opposite direction and there she was sitting on the floor that I love under that blue velvet stool.  I bent down and slowly scooped her into my arms which she curled into and carried her back to bed - and I knew.  Sophie never went into that closet.  She no longer jumped down off my bed.  These were clear signs.  I got back into bed and cradled her in my arms while she slept and I cried.  The next day Sophie and I would be joining my parents back to Wisconsin, home, I just hadn't known it then.

I'm back again in Phoenix, have been since Sunday.  My mom left this morning and despite having people in the house with me today I felt a little lost.  Sophie was my noise even in silence.  So while my helpers were busy downstairs I went into my closet and instead of sitting on the floor I just sat on the little blue velvet stool; grateful a few weeks ago she came here to seek solace.  Now I sit here as the one that remains.  Motionless, a bit numb, staring back at the floor that I love.

Monday, November 26, 2018

The Sophie Chronicles...part 1

Crusin to the airport...smiling

My heart is big enough for this pain.

I have spent more time away from Sophie in the past 6 days than I have in the previous 15 years.  And the most ever days in a row....which before November 20, 2018 had been one.  There may have been one other day I am forgetting, and don't want to be overly dramatic so I am adding an extra for the sake of false memory.  I know the one night, I was in Kohler WI.  I know everything about that one night because my x and I were on the verge of breaking up and my best friend had asked if we could watch their children that evening because she was headed to Madison for a funeral.  My X and I got in a huge fight because I did not think golfing in Kohler WI was going to solve our ills and my friend had never asked anything of this importance of me.  My X had put his foot down her or him.  For years and years I harbored anger at myself for choosing such a ridiculous ultimatum...and Kohler didn't accept dogs.  We never went anywhere that didn't except dogs.  So that day I had disappointed myself twice.  And I am telling you right now I would do anything to get that one night back.  Five thousand four hundred and seventy five days ....would never be enough.  There are never enough days for those we love...we will always want one more.

The calendar that hangs on my wall, November's photograph I didn't like the second it had arrived in the mail...and I often flipped it to December in my room.  It came out darker than the actual photo and felt quite ominous, apparently because it was.  And then there is December...with two of my favorite pictures of Sophie and the message to be brave.

December 2018

 A little over a week ago I wrote a tiny bit about giving Sophie a bath...and how docile she sat.  There were a few things I couldn't say - the most important being a little voice told me this would be the last time I bathed her.  Since I got ill I have had to farm off many of the tasks of caring for Sophie, like taking her to the vet, or making her food.  But a task I rarely delegated was giving her a bath, I had such joy being able to take care of her like that, and she hated bathes so I would always do that myself.  Or micromanage the person who was for me.  One of the hardest things about having a body that doesn't cooperate is not being able to show up.  You don't realize how much of your self worth is tied to what you do.  You do your best to compensate and find value and self worth towards others in many other ways, but being able to depend upon you to show up has been taken out of the equation.  Now many people will tell you I still show up....I will answer any call at any time, I will listen and I will try every coping method to make it to something.  But that nagging feeling that you can't be there in the same way you were takes a toll on your psyche.

That was one of my great fears when I began delegating tasks for Sophie to others, what if her affections change.  In truth the exact opposite happened it was as if she dug in further to my side.  The last six months have been physically very taxing because she no longer cared for others to take care of her - she only wanted me...and this was a hurdle I was willing to jump.  It was mainly the nighttime she changed her eating habits and after all the helpers left is when she decided to eat.  Now my little sweetheart had IBS and through the years we have done a ton of homemade diets.  Lets just say my hands after this past six months may still smell like Gerber baby food that I often would hand feed her as she sat patiently and I sat across her.  At first this was absolutely exhausting, but I then learned how to pace.  First  I would turn off my phone or the tv and all my attention went to her.  Instead of it being a burden it became this gift.  It reminded me of helping my grandmother after her stroke.  So between the hours of 9pm and 11pm most nights you would find the two of us sitting on the floor as I whipped up batches of rice cereal, Gerber ham baby food ( by the way who in the hell feeds that crap to babies, no offense if someone reading this did - not judging but man it doesn't smell very pleasant) and deli ham or chicken and scoop it into my hands as she ate.  Many nights I would talk to her and joke well its just you and me kid.  There were many nights I would tell myself drink this in - this bonding this connection because these are the moments that one day you will ache for...

Just you and me kid

Moments are easily lost in the shuffle of a busy life.  But this illness; and I'm not saying this because I am some zen master, but it forces you to savor moments.  Your life becomes segmented into these tiny moments - and if you don't learn how to be grateful for them this illness will swallow you whole.  So I would tell myself look you are feeding her this is a huge accomplishment and damn is she cute. 

So Saturday night, I don't know what possessed me to get up and go downstairs and give her that bath - I didn't think I just did. Unlike previous bathes when she was done she didn't run like crazy in circles and ditch me like we were playing tag, she calmly stayed wrapped in her towel as I held her and dried her off.

I have a very long post that maybe I will finish because I am a curious person and I like details so I just assume others do too.  That post is much more detailed from Saturday to Tuesday - but maybe its better as a journal entry.  However, I needed to put something out in the cyber world because I'm not sleeping very well and every night since last Tuesday as I'm trying to get to bed I think how will I write this post, do I start at the beginning when I first met her in McDonald's parking lot in Flagstaff or do I start at documenting the end...or discuss what this new beginning is like without my constant companion and a chronic illness.  Or do I write to help others that have gone or will go through this moment and say if I can do it - you can too.  It is all a bit jumbled right now and perhaps that is the best way to go...this is a blog for heaven's sake not Hemingway.  Just because she was perfect this blog doesn't have to be.
Butterfly Beach

What I can say right now is that I am simultaneously grateful and gutted.  That in the end my greatest fear was I wouldn't do right by her and be by her side at the end and I was.  That in the end she took care of me as she always has by rapidly declining on Saturday and Sunday evening so that I took the flight home that my parents were already scheduled on Monday evening.  That she rallied and took in one more joyful trip thru the airport where she is everyone's emotional support dog for those moments of oohs and ahhs.  That Tuesday was one of the most beautiful days filled with love and peace that I couldn't wrap my head around she was gone. That my friends and family supported us in ways that was overwhelming in their care. 

In those final days I did something that with this illness I always feared I could not - I showed up.  It was just me and her - I did not delegate - I was strong for her as she has been for me.  That I had a plan with my vet and he was amazing so we were home, in my bed with her head on my lap as we have been for so many years.  In those final moments it was just you and me kid...we did it.  I am so very proud of us...I will miss you forever.

March 28, 2013 - November 20, 2018

My heart is big enough for this pain.

Saturday, November 17, 2018

How to Be Well

Sunday afternoon I was gathering the last few things to pack on my way back to Phoenix.  It had snowed the day before; I felt this was a fitting sign it was time to go.  After this early snowfall it is hard for people to understand that the pit in my stomach was as big as the Grand Canyon and my resolve not to get on the plane was growing deeper by the moment.  I started some nervous rituals such as looking at what jewelry I should pack and the gloom and doom if something happens all my jewelry goes down with me...thus none for my nieces.  I then chastise myself this is absolutely ridiculous as I put my grandma's engagement ring in and out and in and out and back out again of the case.  Then I thought I will put it on my finger and that will answer my neurosis - it didn't fit.  So of course it was coming with me.  The sliver of a gold band was not.  Then my attention turned to my slightly swollen fingers that the aforementioned ring didn't fit and the muffin that has arrived around my waist...and vanity blissfully helped my resolve to get on the 5pm flight.  My doctors are there, the weather will make it easier to walk outside, perhaps I can fit more comfortably into my jeans.

Then I just sat.  I sat in my bed and looked out onto the snow and I sobbed.  And I sobbed and I sobbed.  And then I grabbed my calendar all swollen eyes and fingers to pack and I turned the if a year ago I knew I would need a sign as it turned to December; be brave and I thought of the badge a friend had sent to me that hangs in my bathroom "I am brave."  I can do this again, I can do it because it is the best chance of next summer being more.  I reminded myself that feeling brave and being brave are two very different things.  It may not sound challenging to head to sunny AZ, but it is so much more than a flight.  It is a continuation of a fight; one every year feels harder to win.

I am tired of doing this trip -this trip means this illness is still in the driver's seat; and I'm so so tired of being a passenger.   Yet I'm so grateful that my body doesn't have to push through a winter.  Every six months I go through the same pro and con list and find the list where I am out ways the list where I am headed.  There is more to write on this but for the moment I will leave it at that.  I had pulled it together pretty well; knowing no matter the little voice inside my head it was a test not a sign and I would be traveling with my parents and Sophie on the 5pm flight from Milwaukee to Phoenix.  Period end of story.  And then my niece walked in - "no one told me you are leaving one tells me anything" For the love of God stab me through the heart twist and turn it and then hit me over the head.  Luckily resolve was set and I was able to comfort her rather than indulge myself.

She asked ten year old questions..."what are you doing for Thanksgiving"...oh honey nothing but that's no big deal I can't eat most of the good food anyways.  "Why can't you see a doctor here"...well soon maybe I can there is more information but these are the doctors that have helped me the most and the weather is hard on me....I said I was so sorry I thought she had understood last night that I was leaving...and then realized the suitcases were in the guest room and maybe leaving to her just meant she was heading home.  To be frank I was a bit surprised at her nonchalance attitude and even joked she was getting so grown up it was no big deal I was heading out.  A good reminder of what we say and others hear are often not the same thing.  I did the only thing I could I just held her tight, and tears silently went down my face and reminded her she would be too busy to even miss me.  This is not a vacation...this is hard.  It is hard to leave and it is hard to stay.

So here I am.  I have arrived.  My doctor has a new machine that is similar to the UV blood one that I have done before but more powerful.  That is the blood is removed and taken to the machine and honestly I don't know exactly what the fuck happens but its been helping her other patients that are living in limbo walking the tight rope and she is very hopeful it will push me to the other side.  The good news for me is that I am only going to her office twice a month so I do feel a bit like a snowbird on vacation.  So I am scheduling "outings" in as I would a doctor appointment and seeing what can be accomplished.

I have learned over the past few years of being relatively stable in this instability that pacing is my number one best treatment option.  Which is a really hard concept for those that are well to understand and very difficult to do without constantly questioning yourself could I do more - should I have done less.  I am trying to look at the next 6 months as a sabbatical - being isolated from so many friends and family there is a bit where I can breathe again.  I don't feel like I am constantly disappointing people or watching everyone live these full lives that mine use to parallel.  Being secluded in Phoenix often is less lonely or a different kind of lonely than being back home.

I gave Sophie a bath tonight.  It was a wonderful feeling that I was able to take care of her in that way.  She normally isn't a huge fan, but she was quite docile I hope because her skin is a bit sore and it felt good.  However the reality is that she is more fragile.  Oh don't get me wrong she is feisty - ask anyone besides me that dares to try and pick her up.  Our time is limited that is not in question - and I can only hope that its some mystical sign that she will leave me when I am well.  It's fanciful thinking but one I've thought of a lot; this past summer I have needed to care for the ever present companion.  She is tired; and I only too well can empathize.  Love.  I had intended this post to be completely different than what came to be...til next time. xo xo

My favorite book that helped me cope with this crazy illness is Toni Bernhard's How to Be Sick.  I am just praying that soon I will re learn how to be well.  How to Be Sick 2nd Edition

xo xo 

Wednesday, April 18, 2018

Empty Hand


I had some pictures to share, but my aol isn't loading…cue the "AOL" jokes….but the picture was or will be if I get it loaded of an empty hand.  The Purple Pill turned into a White Pill (same drug lower dosage) which turned into no pill.  As my doctor said, now let's not throw the baby out with the bathwater, to which I replied have we suddenly been transported to 1952 analogies?  So what happened?  I got worse.  Really worse, could not move worse. What normally happens…he said normally people don't' feel anything and then start gaining more energy.

So where too now…we wait.  We are messing with my thyroid in a different way, getting more IV's more injections, still going to my other doctor, waiting on new labs…what did I do…I called my dad and sobbed.  I really can't even type right now because I still feel like crying, well liar liar I am crying.  I tell myself - I am lucky some people their drugs don't work and it means they are going to die.  This is not the case, but lately this doesn't feel like living.  Thankfully, which I never do I reached out to a FB group and a kind gentlemen replied to me he felt awful on LDN also.  It just feels so defeating…I thought I had given no hope to this little purple pill, I swore I told myself we just will see, but that hope was there and when it failed I felt like I failed too.  The expenses - some people (well my grandfather but that's another story) have attorneys on retainer, I have doctors on retainer.

Text I sent my neighbor last night

And then I cried even more last night because I binged on 4 dresses and one pantsuit…well  I shopped the way I do planning on returning.  What I didn't plan on is not being able to button the dress and getting stuck in the pantsuit.  I'm not sure what has me more upset the Purple Pill or now a physical body I don't recognize that seems to have had a conference with gravity and gravity won.  Oh right on the list of things that are bad - my muffin top you would think is last on the list but it has moved right on top.  What can I do? I can't change my diet, I can't exercise and god damn you illness now I don't enjoy a box full of Diane Von Furstenburg dresses ….Fuck it all - at least jewelry doesn't care if your tummy has expanded.

View Home

This is Vasil...He's from Bulgaria his wife was an attorney there.  He drove me one day when I called the Biltmore Hotel in desperate need for a ride.  That was 3 years ago...Vasil is family.  I left the note because what he has given me is nothing compared to a dinner at the Wrigley. 

But through it all I was driving home yesterday from an awful blood draw and Vasil was driving me and I felt so grateful.  I have a lot of people I can cry too… I've done my best to make lemonade out of lemons…hopefully I can eat a lemon soon.  If this illness was as simple as a purple little pill then we would all not be blogging and making movies, and begging for funds… I tried, I may try it again once I'm maybe stronger but I don't have the what if I had on my shoulders that I hadn't.  And maybe today I will try on those dresses and not give a damn if my once flat stomach bulges a bit - no need to throw the baby out with the bath water.

Here's a few more pictures for the fun of it...and since AOL decided to cooperate and load...
Christine and Capri who has been hanging with us on Fridays

My hysterically funny wonderful new neighbor and Wonder Women's lasso she got at a charity function

My darling
The wedding in the background that Chrissy and I spent a good half hour w binoculars
and hysterically laughing as we came up with scenarios of whom was who...
Three hours later after this was first written got the photos to work…guess I wanted to show it's not all bad there are always moments of joy and nonsense and laughter….that help with the fear and the desperation..

Wednesday, April 4, 2018

Purple Pill


Here's the thing about this illness; every choice is an unknown entity and I'm not a high risk player. (Side note I  just watched Molly's Game - recommend)  I recently decided to consult a second doctor; for one reason he does concierge medicine - and hell who doesn't love a concierge I can pretend I'm at the Four Seasons doing spa medicine.  Also, because I trust him - not him necessarily as a doctor yet - him as the person which in this maze is in my opinion a pretty close tie of importance.  What I mean is I trust he understands how complicated it is, I trust he understands the emotional toll this illness takes, I trust he understands how conflicted I feel that I won't be discussing this with my current doctor and I trust he has continually evolved as a doctor since we last crossed paths.  I also trust that sometimes as my dear late friend and doctor and massage client once said, "is it a test or is it a sign?"  And I'm trusting my gut that the serendipitous way we re-connected was a sign that it was time.

But here I sit for the second night in a row with this little purple pill in my hand feeling like Keanu Reeves in the Matrix, wishing I was staring at Lawrence Fishburne with my face reflecting  in his sunglasses urging me to take the little purple pill; here's the thing there isn't another option in my left hand.  Just the purple pill in my right.

But first how I re-connected with the second opinion  doctor then back to the little purple pill.  I was helping a fellow CFS/ME patient trying to recruit attendees to the Tempe, AZ screening of Unrest that she was hosting.  She asked / I offered to contact my alma mater SCNM to encourage Naturopathic Medical students and faculty to attend.  I had heard an old colleague was working back at the school, I emailed him - he emailed me who he thought best to contact we exchanged pleasantries - period end of story.  End of story meaning my school showed zero, zip, nada, interest in cooperating with such request.  Oh, I'm sure if you ask they will pretend no one contacted them; yada yada moving on….about a month ago the same person contacted me and said, "Did you see that SCNM is HOSTING UNREST."  I replied - not shocked I'm sure they heard Univ. of Arizona Medical Center is hosting in their Phoenix location and now they don't want to miss out.  I shoot out an email to the same colleague asking if he knew who was hosting Unrest at SCNM and he said he had resigned and was back in private practice…concierge medicine and also an office in renovation close to my home.  

Test or a sign?  I don't know that's why I'm still staring at the little purple pill like its the biggest life decision I've made.  And perhaps in some weird way it is - because it feels on some level like the first decision I've been well enough to make which ironically I have my current doctor to thank for.  In the beginning this was all such a blur I wasn't really making decisions they were just being made.  I was so lost, the doctors I was consulting were worse than lost they were arrogant and wrong that for 3 years I just kept moving and being told I wasn't sick while getting sicker.  My current doctor was the first to say you are a very sick person and I believe you.  That is powerful, that is a life line and that is hard to tether away from…but I've stalled.  I've stalled and that is no one's fault and maybe it’s not a stall it’s an as good as it gets situation.   However,  my current doctor sees one path and she would disagree with the path I'm considering…and here's the catch - no one knows - the only thing that will give me the answer is to take what feels like the very unsafe untraveled road because I haven't taken it before.  It could be disastrous as anyone with this illness knows - wrong moves are like playing chess - well I'm trying to learn chess and I don't get it - but a 9 year old is trying to teach me.  Point being I'm on the safe road right now and I've been getting really good at it - and that's the unknown - is the safe road the correct road or am I missing the chance at improving by taking the back roads?

The little purple pill is "just" Low Dose Naltrexone- everyone is doing it …. but I haven't.  I'm not in a body that anyone really understands and what is working for a lot of people doesn't work for all people.  What's the risk in trying….everything.  Or that's at least how it feels.  Going against the advice of your doctor for 9 years.  I told someone the other day the old saying don't make decisions out of fear.  This is where I feel a bit catch 22…this fear it isn't made up - it's real - it has merit but it also could have rewards.  What am I willing to risk in order to gain?  I told my new consult doctor if you laid on the table the promise that what you are recommending could give me 5 years of my pre sick life.  5 years of not having to worry about what food I ingested, the opportunity to travel and have my nieces and nephew see my old life and participate fully in theirs, if I could go see where all my friends lived, if I could feel that freedom of living again or I could live til 90 like this…my gut is to take the 5 years.  That's an awful position to be put in; and I know I'm not the only person that has been backed into that corner - the one of looking at a life before and a life after…and this damn little purple pill it's not just the pill it's a new leap of faith that there is still some hope to get back what I had.

As I was getting a saline IV today the assistant to the new doctor said okay take a deep breath in and let it out…she was afraid she would hurt me and I kind of laughed and said being poked more than once is really not a big deal.  My hand was squeezing one of those little stress balls to pump your vein up and my head was turned and I said to her, can I let go…she said yes.  I replied I suppose I should take that both literally and figuratively.  

Time to let go.  I have no idea what the right choice or wrong choice is - no one knows.  I know the reason I'm not taking the little pill sitting on my bedside table is fear.  Fear that I've handled what I've done can I handle getting worse if this backfires?  But at the end of the day I said I would try for those 5 years…there is only one way to know.

Today is the 50th Anniversary of the assassination of Dr. Martin Luther King…and as I'm writing that realize that he too said the something similar about something much bigger than himself…this illness is much bigger than myself, all of us - every single patient like many illnesses before and many unknowns have taken risks - we are our own guinea pigs right now - we are communicating the science waiting for the science to catch up to us, we have all been blessed with living the life of the promised land the life in a body that free will gave you choices and something took those choices away.  We as a community have rallied together around each other and shared our experiences - we have been marginalized, maligned, and through the collective voices of the Internet gave us a voice.   

It scares me more knowing that after that sermon on April 3, 1968 it was a prophecy to his murder, and I will go back to my dear late friend Kate Hart - is it a test or is it a sign and I choose a test.  A test do you have what it takes to dig beyond the fear of the unknown when the reward could be the removal of the shackles you have adjusted to live with.  I have no clue what the blue or red pill did in the matrix but I know this little purple pill means not giving up…choosing the road I haven't traveled that in of itself feels a little like my pre sick self.

This post is dedicated to Sue Jackson for her amazing blog Live with CFS where I re read all of her LDN posts.  It's dedicated to all the patients on the FB groups that support one another.  It's dedicated to my nieces and nephew - they give me a reason to choose the unknown.  

This post was also written with sweaty palms a pounding heart and also gave me courage to not feel so alone - knowing that others reading have been in this very same bind and others I have read gave me the nerve to try.  It's time to let go -  I swallowed the pill.

Disqus for Festzeit